Monday, October 31, 2011

It's Official: Brain Cancer

There's an argument in the medical world about brain tumors. A stage 2 astrocytoma often isn't called, "brain cancer" - it's just referred to as a stage 2 brain tumor. It's not until stage 3, does the world refer to an astrocytoma as malignant. That has always baffled me. I've listened to my doctors over the past year and half, listening to the voice fluctuations, the terminology, waiting for changes, trying to make sense of their words. This past appointment on the 25th was eye opening. It was the first time my radiation oncologist spoke of my brain tumor as cancer. Before that, he only discussed the "tumor."

I have brain cancer. Yikes. That sounds a hell of a lot worse than a brain tumor. I was happier with the brain tumor label. But he's right, I don't exactly have a brain tumor anymore, they removed the tumor and now I just have cancer cells all over the back of my brain. Some in nuggets, others invisible to the scientific eye. Frightening stuff.

So here's what we learned at the appointment:

Average growth of my type of brain tumor is approximately 4mm a year. From April of this year to October (this appointment), my brain tumor grew by 4.5mm. That was a 4.5mm growth in six months. Bad deal.

My radiation oncologist wants to start radiation therapy right now. Here's the information he gave about the process:

It will be conformal radiation - they will radiate the whole tumor area. It will take 5-6 weeks. It's a treatment every day except Saturday and Sunday. To start, they will create a mesh mask that they will form to my face. They will then lay me onto a table and screw that mask to the table so that I can not move. If I move, even a tiny flinch, during treatment it will damage a whole new host of healthy brain cells, killing them. The first appointment will consist of 30-45 minutes of my face being screwed to a table while they measure things. Then the following appointments will be a one hour block. They will strap me down and screw my face in to the table, then there's the 10-15 minute radiation with the beams. It will be 3-4 high powered beams going through my entire head from all sides, converging at the back of my head where my tumor mass is located.

Side Effects:
     Short Term:
          Fatigue, Edema (accumulation of fluid in the brain), Seizures, Hair Loss (very likely permanent in the tumor area, but they'll know for sure after three weeks into the radiation), Nausea/Vomiting

     Long Term:
          Second Malignancy (a second or more tumor in another area of my brain), Damage to Normal Brain Tissue, Memory Loss, Face/Neck Skin Pigment Change, Sight Loss, Language Loss, Movement Loss, Neuro-Cognitive Loss....all of these long term effects are permanent damage that will not come back.

The kicker of this treatment is that it will not add any time to my life span. None. Basically, they will radiate the entire circumference of my old tumor, and add a buffer zone where they will kill healthy cells around the area to try and kill any invisible tumor cells in the outside area. The biggest concern in my mind is that my tumor was massive. Therefore, the buffer zone around my tumor area is quite large. That's a lot of damage to a lot of healthy cells.

The doctors say that the long term effects are permanent. They believe that radiation, right now, is the right choice because they believe that all of the short and long term effects will happen anyway as the tumor grows, so they believe that zapping it right now may slow some of the side effects. I guess they're expecting me to eventually have no vision, be paralyzed, have limited speech, limited cognitive abilities, and have to deal with a second or third, or however many more brain tumors in the rest of my head. This is crazy.

I keep thinking and thinking about this radiation and it just feels wrong. I just can't do it. I can't damage my brain, and my body like that. My radiation oncologist already doesn't like me because I refuse to get back on my anti-seizure medicine. I try to keep it light and tease him, but he is unimpressed by my chutzpa. I figure, it's MY BODY. It's MY BRAIN. It is NOT his brain. When I tell him I'm not going to do it right now, I know he will act like it's some grave mistake, but you know what - it's not his tumor. This is my life, and he can shove it. Sometimes I feel like he's drooling over my brain, and that's creepy. He has bought into the "standard of care" doing radiation, and I believe that there are other answers.

So, instead of jumping on the killing machine, I've started a new alternative therapy. Some of you might think I'm crazy, but that's ok. It is widely known that our FDA is hand in hand with pharmaceutical companies, and that they fund most research. That makes it incredibly hard to get valid alternative treatments recognized in the US. If there's no money in it, it's hard for hospitals and practitioners to jump on board. It's just our system.

I'm going to find my own way, right now using artemisinin (the main ingredient in anti-malarial drugs). If this doesn't work, I will try something else, maybe the Burzinski Clinic in Houston. I will not kill my body. I have been very fortunate to have a brain tumor fighter contact me to share their fight, and success of stopping, shrinking and then killing her brain tumor. Her husband has joined my fight to help me beat this. They've shared their MRI's, their techniques, their recipes, and their research. It's fantastic!

Here is what I'm doing:
  • At breakfast or lunch I have 500mg of vitamin C, 400 units of vitamin E (with mixed tocopherols), and  a D3 vitamin
  • I stop eating at 4:30pm
  • Four to five hours after eating dinner, on an empty stomach, I take 2 capsules of Artemix and 4 capsules of Butyrex (I might end up adding a ferrous iron supplement too, but I need more information). 
  • Between dinner and the pills, Danny and I take a quiet, relaxing walk, or visit, or watch a movie. Or I'll take a bath. I try to use that time to decompress. 
The premise of this treatment is that the artemix (consisting of artesunate, artemether, and artemisinin) binds to the highly iron filled cancer cells and kills them. 

Obviously, I'm not a doctor, and I'm not recommending that anyone do what I'm doing. If you're interested in the research let me know. I'll try and figure out how to add a page to my website and include all of the reasearch documents. I'm not going to include the MRI's, but the research alone should impress.

When I received the results of this past MRI I was in shock for two days. Then, I went into a deep depression. I would wake up and head downstairs to my favorite chair. I wouldn't get up until my bladder hurt so badly I thought it would explode. I couldn't get myself to the shower, I didn't want to eat, I didn't have the energy to talk to anyone or get on the internet. I was scared if I talked to friends I would just lose it and cry uncontrollably. So, I isolated myself. Things are looking up though. I'm happy to say that I'm on an upward swing. I was so scared, and it seemed so unreal, but the more resesarch I read about the artemisinin the more hopeful I become. It's an amazing cancer fighter for many, many types. Maybe, after all, I will cure this. Maybe I will be that 1%!


  1. Jess- I Believe in miracles and I believe that you WILL be that 1%. Do what feels right, we are all on your side. xoxo Terese

  2. Dear Jessica - not sure that you know me - I went to school with your beautiful mom and reconnected when I moved to Friday Harbor - I am so in awe of your courageous and conscious way in which you are handling this sad aspect of your young life. I heartily support alternative healing methods as I have seen so much go wrong with the other approach. I chose many alternative paths and was always shunned by doctors, authorities etc and it is not an easy path. You are right in that you are not a doctor, you are so much more - you are the soul and spirit of this body you are walking around in and ultimately the decisions regarding how to treat this vehicle should be yours and yours alone. Please hold on and keep up the fight - there has been some profound healings as you know. I wish to share a prayer with you - I do not associate myself with any one religion but rather seek spirituality in all things - This prayer is from a book entitled "Illuminated Prayers" by Marianne Williamson - I have found it comforting and hope you do too. With much love and support - Cynthia Burke
    Dear God -
    My body is broken,
    I need Your help
    I fear I will not get well.
    Please God,
    send angels to deliver me from my pain
    and sickness
    and fear,
    I know salvation is the only true Cure,
    and yet I doubt
    when my body hurts.
    Help me, Lord.
    Please bless my medicine
    and guide my healers.
    Thank you, God.

  3. Awww Jess - you are doing what is right for you!!! Don't let anyone tell you to do differently - stick to your guns. I knew you wouldn't answer so I just cried on the phone to Terese when we found out the results last week! I love you! Sarah

  4. I have followed your blogs and was waiting anxiously for you to start writing again like so many other readers. I think you must follow your own drummer. After all, many treatments that doctors now use must have come from people who discovered "alternative" solutions that turned out to be successful. Remember, they call it the "practice" of medicine. I believe you would always regret it if you did not take charge. Your primary healthcare giver is in fact the face you see in the mirror. Good for you, Jessica.
    Diana Clark

  5. Only YOU know what YOU need to do. It's your choice and your decision and it sounds like you make your decisions with good education, fact findings and research. Keep up the good work girl!

  6. Jess-
    I am keeping you and Danny in my prayers through this journey. You have an amazing strength and are an inspiration.

  7. Jess,
    Gene and I are behind you 100%. We have 75,000 air miles and I think that could take 3 of you, round trip, to Houston. I bet Dr. Burzynski would applaud you taking a stand. Someone has to be the 1%, the miracle, and why not you? You're tenacious when you regroup as you have. It was devastating news, but like Rocky Balboa, you will not give up. The radiation onocologist should honor your decisions. Ask him if he were in your shoes if HE'D have radiation . . . Sounds like you're on a great new program with the artmesinins. xoxoxo

  8. GO Jess! Way to do what you feel is right for you. Only you know and never stop listening to that voice inside you.
    Love you!!! Ally

  9. Jessica, This is Andrea's mom. There's one thing about you Horned Frogs, and that is: "You are special in God's eyes, you are fighters, and you leave inspiration with everyone you come in contact with because you do love the Lord our God with all your heart, soul, mind and strength." If you come to Houston, I would love to meet you in person. You and Danny are in my prayers. xoxoxo,Kathy

  10. Jess - You are the most amazing person I have ever had the privelege to meet. Your courage, your strength, and your candor inspire me each and every day. I can't wait to celebrate you beating this stupid tumor. Love and Hugs ~ Sara

  11. Dear Jessica. So glad to read your post. I am so proud of your knowledge and your choices. You are absolutley right concerning the FDA and pharmaceutical companies. They also influence our doctors and the choices they provide to us. You are taking a different path, not right or wrong, just's your path. Stay strong like you have been. You are in our thoughts and prayers. I hope you can feel the love xoxoxoxoxo
    Leisa and family

  12. My most positive thoughts are with you both. You can't go wrong to follow what your heart tells you. Know you are in our hearts and prayers and visualizations of joy.

  13. Hi Jess,

    I check your blog from time and time, and am sorry to hear about what you're going through right now. I got to tell you, though, if anyone can get through this, it is you. I firmly believe that.
    Journalists are wired to remain impartial and detached. But to do this day, of all the people I have interviewed over the years as a journalist — and there have been thousands — you're the one I most admire. You're not famous, nor, from what I know, super rich. Yet you've always struck me as a person who truly possesses two of the greatest of all human characteristics — those of hope and strength. Part of that comes from your words and part from your actions.
    Today, as I read of your dilemma and struggle, it's clear you are an amazingly courageous person as well. No doubt about it. That inspires me greatly as I'm sure it does anyone who knows you or has learned about you.
    Years ago, while in college, I read "Sometimes a Great Notion," the great American novel by Ken Kesey. It tells of the struggles of a spirited logging family in Oregon. One of the big themes in the book, as conveyed by the family, is to "never give an inch."
    That's you, Jess.

    Steve Maher

  14. Somehow when there are no words, you seem to find them to tell us the most intimate and tender details of your heart.Your life is PROFOUND! Your effects far-reaching, I'm in awe....

  15. Jess,

    What an ispiration you are to show your determined fighting spirit. I hope my girl can be as brave and as strong as you are as she gets older. May God go before you, and I will lift you up in prayer.

  16. Jess,
    U r truly an inspiration! I cannot imagine What u and your family r going thru! Only u can truly know what is best for your body! Stay strong and positive! All my love and prayers go out to You and your family!
    Sarah Mccutcheon

  17. Sending love your way! You truly are amazing, and a gift to us all!
    Jenni H

  18. Jessica... I don't know you. I haven't seen your mom since high school but I feel the need to say something but I don't know what.
    Reading your words is amazing. You are so bright. I love how you actually give thought to what is going on with your body. Your strength encourages me.
    My thoughts are with you and Danny and your mom and dad.
    Girl, your an inspiration!

  19. All my love and support in your fight Jess. Keep being you, that's your ace in the hole!! xx

  20. Jessica,

    I wish there was a bigger word for inspiration! Your strength is contagious, and I admire how you and your family are conquering the fight! I support any treatment that you believe in, and screw the doc, if you don't feel it, its your choice! I am proud of you for choosing other ways to treat this! I think we give too much trust to doctors, and when you know what you think your body can and can't handle and you go against that gut feeling...the outcome is more disappointing for us then the doc's......Anyway I am totally rambling, I love you, and you are thought about all the time! XOXO - Gio


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